Cancer 3.0

Tom spent the Fourth of July posting photos from his wedding last October to Facebook. I liked a photo of Mimi and me together on that happy day, so I made it my profile photo. More than 200 people “liked” it and another 20-plus commented, all encouraging messages. Several noted that I looked good. I was tempted to note that the photo was from last October. But I got some similar comments about looking good when I posted some photos from the road that same day on the way to Houston.

I do look good. I don’t say that boastfully, but kind of ruefully. I look (and feel) better than my news: I was at the MD Anderson Cancer Center last week getting my third major cancer diagnosis. This time I have pancreatic cancer.

I was honored and uplifted by how many people encouraged me during last year’s treatment for mantle-cell lymphoma. If you were heartened in some way by my kicking-cancer’s-ass narrative, please know that I did kick that cancer’s ass. My lymph nodes look great, and they’ve gotten a close look the last three-plus months in a PET scan, an MRI, two CT scans, two endoscopic ultrasounds and lots of lab tests as doctors have tried to figure out what the hell was going on in my pancreas.

This is another cancer entirely, not a return of the lymphoma. Those heavy-duty chemicals injected into my veins last year killed a lot of stuff, and all of the lymphoma. But, as my pancreas specialist, Dr. Matthew Katz, explained, the chemotherapy that kills mantle-cell lymphoma isn’t what you need to treat pancreatic cancer. Maybe the pancreatic tumor was there all along, a couple of doctors have theorized, undetected amid all the lymphoma tumors surrounding the pancreas in 2014 when I was diagnosed. My chemo might have held the pancreatic cancer at bay last year, but it resumed growing enough when the chemo stopped to be noticed as something in my follow-up scan this April. All those other tests followed that scan, trying to figure out what that something was. We finally got the answer last week on my second biopsy.

I spent four nights in Houston, two hospitalized and two in the attached hotel. I had doctor’s appointments, lots of lab tests and that biopsy.

We don’t know yet whether my tumor was discovered early. Medical oncologist Dr. Robert Wolff explained that I might have Stage I pancreatic cancer, which would be bad. Or Stage II, which would be worse. It’s not Stage III, but I might have Stage IV, which would be the worst.

On scans, my tumor appears confined to the pancreas, or localized, which would be the best of the bad news. That would mean we might be able to treat this successfully with chemotherapy and surgery.

But the tumor markers in my blood are much higher than you normally see with that localized Stage I pancreatic cancer. That probably means cancer seedlings too tiny to be seen on the scans have spread outside the pancreas, perhaps to the lining of the stomach or my liver. I’ll be returning to Houston next week for a laparoscopic examination. Last week’s endoscopic examination went through my esophagus to look inside my stomach and intestine. This time the camera will go through an incision in my abdomen and look around outside those organs, where Dr. Katz should be able to see if the cancer has spread. And he’ll take a third biopsy, this one from my liver.

If my cancer is at Stage II or IV, chemotherapy can impede its growth, but we would basically be playing defense until that becomes pointless.

(Apologies to any friends or family confused if this contradicts anything we’ve told you earlier. We learned more as the week unfolded, and timetables and details have changed.)

I had lots of time last week to wait for appointments and results and to read news reports about the bizarre developments in the presidential race and about the horrific violence from and against police, starting with a shooting in the city where I live. I couldn’t look away from the news and yet, I couldn’t really focus on it. Often big stories trigger the reporter instinct, an urge to rush out and cover the story (or at least blog about it from afar or read and watch the news insatiably). But when you’re hooked up to an IV or awaiting pathology results, even that instinct turns numb.

Some friends and family have expressed anger at my facing another type of cancer so soon after finishing my last round of lymphoma treatment. I won’t say I haven’t been angry or sorrowful myself. But I was called from the waiting room to get my CT scan July 1 along with a boy who looked like he was 7 or 8, accompanied by his mother and a brother who looked as frightened as the patient. Let’s save our anger and sorrow for them and other children facing these awful illnesses. (From our hotel room in Houston, we could see Texas Children’s Hospital, which looks like it’s about 15-20 stories tall, every floor filled with stories sadder than mine.) I lost a nephew at 16, another at 19 and a great nephew at age 7. I’m not going to whine (much) if I’m running out of time in my 60s.

I’ve lived a good life, and I can handle whatever Cancer 3.0 deals. But I’m angry about children facing this mystifying disease that this old man can’t understand, about children who won’t get all the opportunities I’ve already had.

I’m angry as well about the people grieving after last week’s violence. However much time I have left, I’ll get a chance to say goodbye to the people I love.

Whatever next week’s surgery shows, we have absolute confirmation of my observation from 2014, when I reported my lymphoma diagnosis: I am fertile ground for growing lumps, especially in the abdomen. I had a cancerous colon tumor removed in 1999, plus some polyps since and that trifling 2005 round with basal cell skin cancer (that was up on my neck). And the lymphoma diagnosed in 2014 caused lumps from my jaw to my crotch.

I may undergo some sort of genetic testing that may help identify whether my problem goes beyond bad luck, in hopes of providing early help for any of my sons if I have passed those genes on.

The sons and Mimi have been great through this all. Mike flew down to Houston as soon as he learned of my diagnosis. Tom flew in Saturday to spend a few days with us at home. Joe is on deck, ready to come whenever we need him. All three have been here for us several times since Cancer 2.0 started and will again. I could not ask for better support from family and friends.

I have grown weary of cancer testing and treatment. I don’t know what the doctors’ next recommendations will be, nor whether I will follow them.

Since I feel great, I’m not canceling any upcoming travel plans yet. If I have to undergo chemo, it will be outpatient chemo and pretty mild compared to what I endured last year. My immature bone marrow wouldn’t be able to handle anything heavy-duty.

At this point, I plan to keep commitments to speak on panels at the Association for Education in Journalism and Mass Communication in August, at the Online News Association and Excellence in Journalism conferences in September and at a Washington & Lee University Ethics Symposium in November. But I’ll write the organizers of all those events, sending them this link, and I’ll understand if they want to substitute someone else now, rather than at the last minute. I’m scheduled to teach a class this fall at LSU, and will be discussing with the dean and associate dean whether to proceed and what Plan B will be if I need to back out during the semester.

I’ll admit to some frustration and the weariness I already mentioned, but I’ve had too much joy to feel sorry for myself. Whenever my end comes, if cancer is the cause, do not say I lost a battle with cancer. I won a game with life, but the game eventually ends.

I don’t know whether I will write as much about Cancer 3.0 as I wrote last year. I loved the connection to family, friends and strangers who became friends through sharing my 2.0 journey and journal and my updates on social media, and I thank you profoundly for that. But at the moment, I don’t have much more to say. When I do write, I may spend my time on private letters to Mimi, my sons, other family or friends. I don’t think I’ll be going silent here or on CaringBridge. I’ll still post major medical developments there, and Mimi may when I can’t. But I may not be as chatty about treatment there or journalism here.

Or maybe chatty Steve will return before long. I’ve been surprised too many times in the past couple of years to predict what comes next.

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119 Responses

Steve … so sorry to hear about your latest diagnosis. How rough. But as you say, you’ve had lots of terrific experiences (and lots of difficulties, too) since your first diagnosis in 1999. No one will ever be able to say anything other than, “You lived life to the fullest — and took advantage of every moment you had.” And that’s what we all should be doing, every day. Best wishes, good luck, and my thoughts and prayers are with you.

I can’t think of anything else to add to this, other than “Cancer sucks.” I think you’re seeing from all the responses and love you’re getting here and on Facebook, that you have touched a lot of lives, and generated true affection in the people who have crossed your path.

Steve: I’ll never get out of my mind the times I sat with my dad as he waited for radiation treatments on his glioblastoma tumor. Essentially the doctors gave him no hope of ridding himself of this deadly tumor; it was a matter of giving him time to be with family and friends and live life as he wanted it to be for as long as he was able. But what I remember most about our waits is how he’d look around the waiting room and see children waiting, too. And he said what you are saying now, and questioning why it was that so many of them were having to deal with these burdens at such a young age. He’d tell me about how he’d lived a long, good, happy life and if he could do anything to not have these kids having to face what he was facing in his early 70s, he would. So I hear his words in yours. I will you all the healing treatments you can find (and endure), and will understand if you don’t keep all of us in the loop of your life as much as you did before. Be good to yourself and to all who love you. We’ll be there when you want to be with us. All best, Melissa

Words fail at times like this. It was hard to get past the beautiful photo of you with Mimi. The good in both of you really comes through in the photo. You may have a bum pancreas, but you have a fully functional, gigantic heart!
When I was at The Post, I worked with a guy named Bill Strauss, who battled pancreatic cancer for eight years, overcoming all the odds. He founded the Capitol Steps and started an awards program for high school theater students. He was an inspiration to many in the DC area. I share his story:http://www.washingtonpost.com/wp-dyn/content/article/2007/12/21/AR2007122102403.html

Damn. Life is great, but it’s not always fair, clearly. Despite the lousy diagnosis, I know you’ll try to be superhuman in your fight. And I hope you’re encouraged by how many people appreciate this blog — even those of us who haven’t told you that before! — so that you will keep it coming. Thanks for your thoughtful work — which is both personally and professionally inspirational.

Cancer has left a personal mark on nearly everyone, but it’s always painful to hear of someone who’s emerged from one form only to be stricken by another. I wish you nothing but the best, and I hope that’s what you get.

This is an extremely sad update. But also: grateful, faith-filled, loving…and a model to emulate. You’re in my prayers, Steve, and so are those children you noted. Such perspective. My favorite line (other than the reminder of your seeing the Royals win the World Serious): “…Iif cancer is the cause, do not say I lost a battle with cancer. I won a game with life, but the game eventually ends.”

Thanks for the kind words, Matt! Sometime I should Go Figure the odds of one guy having colon, skin, lymph and pancreatic cancers. I think they’re even higher than the Yankees’ odds of winning this year’s World Series.

Sorry, posted this originally under the wrong WP account.
You’re an inspiring force for good in so many ways, Steve. Just wanted you to know I’m feeling that force in Brookline this afternoon, and am forever grateful for it. All best to you and Mimi.

Past the cancer, past all reason, past all judgment of the reasons for human life and death there exists a book that I am going to tell you about. A friend’s uncle was a scientist with an illustrious career. He believed what you see is what you get and although brilliant was rather irascible. A car accident immobilized him in a hospital and a nurse was so aggravated by the way he treated the medical staff on the ward that she took away his TV remote and all other ways to pass the time–except she left him one book. That book, Journey of Souls, by Michael Newton, Ph.D. changed his philosophy about life so much that he demanded that all of his family members read it. That is why my friend recommended it to me. And that is why I am recommending it to you. I don’t even think you will read this post, the book, or respond. And that is OK by me. May you navigate this course with the same tremendous grace you’ve sailed through the waters of your other treatments and healings, and may whatever your experience in The Place That Is The Next Place From Earth, I wish you love–and freedom.

Steve, you are the kind of teacher we all hope to be. Thank you for your courage. Thank you for sharing your knowledge and for teaching us teachers. Yours was the first site I cited the first time I pitched a curriculum overhaul. Your ideas are precious to me. We are all better for your example. So, thanks and I hope to see you at AEJ.

Ah … Steve, Steve, Steve. I rarely struggle for words when I write, so I better just go free form here. What I have noticed about you since Cancer 2.0, if not long before (but I just failed to make note of it), is how well you live. How you love everything you, everything you experience, all the many people in your life. I almost root for the KC Royals against my Detroit Tigers when they play — for you — not that they need much help from me! You are the best teacher I have experienced in my life, and that is no mean statement since I watch how everyone from from my golf pro to my own personal teachers teach. So I will not dwell on 3.0. I will dwell, and continue to dwell and marvel, on well you live life. So bottom line:
Continue.

You’re honored; I’m grateful.
And I will continue to be as you continue to show us how a good life is lived. When I think about you, I think of other good lives lived in my lifetime: Elie Wiesel, Ernie Harwell, Ara Parseghian, my maternal grandparents (Ara is still with us, so do not look for death in this list).
Sorry for the typo above (…everything you do, …).
But for me and your extended family to continue to live vicariously through your life, you must continue to write, Steve. I know I have no right to say that to you, but you write to live — and live to write.
So please: write.

PS: Yes, that’s my LiveStrong T-shirt from the Lance Period of my life. Say what you will about Lance Armstrong, but he biked to live. Furiously. Maybe a little too furiously. OK, too furiously. But the “bike” for you is writing. So write.

Heartbreaking. Just heartbreaking. My admiration for you grows — you express yourself well, with poise, and dignity, and transparency. Know that I will continue to pray for you and Mimi through this. You both are such kind people, and I have such great respect and affection for you. Praying!

Steve, I have no words. I am so sorry, and will keep you and yours in prayer. I appreciate your attitude. Oh, and finally started Gathering String…asked for it for Christmas. Tell Mimi I’m enjoying it…especially all the “inside” SW Iowa references! Cheers.

Steve, good for you for looking your cancer in the eye (or any other organ that fits at the minute). It sucks, as does every life-altering, life -threatening, life-ending diagnosis, but you have done such good work with all of that. As with your insightful writing on media week after week, your writing on cancer has provided new ways to understand and even appreciate the experience. As a person 11 years out of a diagnosis that indicated that I’d “be dead in a year,” it is meaningful to read how another person puts it all in perspective. The best teachers are those who show us how to live with grace. Thank you for being one of my best teachers. Deni

On Mon, Jul 11, 2016 at 11:52 AM, The Buttry Diary wrote:

> Steve Buttry posted: ” Tom spent the Fourth of July posting photos from > his wedding last October to Facebook. I liked a photo of Mimi and me > together on that happy day, so I made it my profile photo. More than 200 > people “liked” it and another 20-plus commented, all enc” >

Dear Steve, this is from your ‘once removed’ relatives from the frozen north.

We are so sorry to hear your news but at the same time just love your way of telling it and rationalising it when compared with the children.

We, too, were devastated when we lost our lovely grandson Keaton earlier this year but at the same time SO grateful that we had almost a week with him and the kids just a week before. We have come to realise that though his time was so short his life had a real purpose, he brought so much love and light and happiness.

As do you with your amazing way with words. Our hearts are with you Steve and Mimi and should you ever feel an urge to visit bear country in rural Ontario our dome’s door is open to you.

Maybe next time we are down to visit Matt and Mandy perhaps we could all meet up? I think we met at their wedding but that was one or two fragrant summers ago! LOL. Anyway, sending you our very best wishes and love from a geodesic dome home.

Steve – we have never met, but I went to high school with your brother, Dan, in the ‘Burg. Dan and I reconnected at our reunion last year and I have been following his travels and musings via Facebook and started reading your blog because of his FB posts. I am sorry to hear that you again have to fight the demon cancer. You are both a brave and pragmatic soul and I wish you peace on this journey, no matter its length. I will keep you and your family in my prayers. Have fun every day, for every day you have!

I could not stop swearing at the screen while reading this, so I’ll keep it short. I’m sorry I wasn’t much of a part of those kind words and comments you spoke of. I’m so fortunate our paths have crossed as many times as they have — I’ve gained much more than I’ve given — and I’ll count myself extra lucky to have the chance again. But more than that, I wish you and your family so many more wonderful days and memorable experiences.

Hi, Steve, from a former World-Herald colleague. I’m sorry to hear about your latest diagnosis and all you’ve been through. Thank you for sharing your experiences, though. Your writing is beautiful (as usual), a reflection of the good person you are. May God bless, strengthen and encourage you and your loved ones.

I hear the weariness. I hear the joy, the pain, the frustration. I hear the defeat and the determination. I hear the myriad, complex human things. I hear that because your writing voice is a gift to those of us who know you and those who should. Godspeed, Steve.

Dear Steve–As someone, like you, who has spent a lifetime working with words, they fail me now. But here are a few that break through the fog of sorrow–prayer, strength, faith, courage, love, love and more love. God bless you and your family,dear friend.

Thinking of you and Mimi, Steve. I’m so sorry to hear this news. You’ve written so beautifully about your experience. I hope that writing instinct comes back. You have too strong a voice not to use it.

Ugh, I am deeply sorry to hear this, Steve. I am an independent filmmaker who discovered you and this blog by attending one of your social media and journalism workshops at the University of Colorado in Boulder some years back. You’ve done such an exceptional job here, reporting on and analyzing the changing media landscape, I just wanted to let you know how much I have enjoyed your writing and benefited from what you’ve had to say. I will continue reading as long as you are willing and able to write about this stuff (hopefully for a long time to come). Rooting for you and your family. Big time.

Hi Steve, I just found your blog 5 minutes ago. I am a new student studying professional communications and was looking up the 5W’s and 2H’s when I found your blog. If you can make it to Glory of Zion in Corinth, Tx. the intercessors there have seen miracles with cancer being healed in advanced stages. I do not know how far it is from Louisiana, but this coming weekend is huge conference for the Hebrew New Year. It would be a great time to go experience the anointing and be healed Steve, in Jesus name. God Bless you.

[…] informed followers of my CaringBridge journal Monday that I am finished with treatment for my pancreatic cancer. There are no current clinical trials for my kind of cancer that has spread to the liver, and no […]

[…] informed followers of my CaringBridge journal Monday that I am finished with treatment for my pancreatic cancer. There are no current clinical trials for my kind of cancer that has spread to the liver, and no […]

[…] colon cancer in 1999 and mantle-cell lymphoma in 2014-15. An edited version of my blog post about Cancer 3.0 ran on the health-care site STAT. After a few months of chemotherapy, we learned in November that […]

[…] But I had some weird, inexplicable sense of foreboding when earlier this month I stumbled on a link to former boss Matt DeRienzo’s blog post about former Digital First Media colleague, journalism professor and human inspiration extraordinaire Steve Buttry’s heart-numbing battle with pancreatic cancer, his third major cancer diagnosis. […]